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Abstract

Objective:

The present study compares the ways of coping, and mental burnout of Bedouin mothers with those of Bedouin fathers of children with autism spectrum disorder (ASD), and examines whether there are any relations between these variables.

Method:

A comparison was made between the 74 Bedouin mothers and 74 Bedouin fathers of children with ASD, on ways of coping, and mental burnout. Questionnaires were used: a demographic questionnaire; a Ways of Coping Questionnaire, developed by Folkman and Lazarus and Mental Burnout Questionnaire developed by Pines.

Results:

In the comparison between Bedouin mothers and Bedouin fathers of children with ASD on the measures of ways of coping differences between mothers and fathers were found only for escape-avoidance coping. On the measures of mental burnout, a significant difference was found thus, the mothers showed significantly higher mental burnout than the fathers. In examining the relations between the variables: significant relations were found between ways of coping strategies and mental burnout for both Bedouin mothers and fathers of children with ASD.

Conclusions:

The findings of the current study highlight the need for subsequent research, particularly on the escape-avoidance coping, as well as on culturally-tailored interventions, which are focused on social support for both parents.

Keywords

Ways of coping, Mental burnout, Bedouin parents, ASD

Introduction

Autism spectrum disorder (ASD) is a
debilitating, life-long neuro-developmental
disorder characterized by social deficits, restricted
interests and repetitive behaviors [1]. Children with ASD have more challenging behaviors [2],
sleep disorders [3] and psychopathologies [4,5]
than typically developing children. Every culture
in the world has children with ASD and the
diagnosis of ASD for children continues to rise.

Although cross-cultural similarities exist related
to stress in caring for a child with disabilities
[6,7], individual and cultural differences play a
critical role in how parents respond and cope
with the challenges related to their child [8].
Relatively little is known about the coping
behaviors of Middle Eastern mothers, and there
is only one published study on fathers [9]. Till
now, no research has been conducted on fathers
in the Bedouin community.

The Bedouin community

The Bedouin community has unique
characteristics. It is estimated that the population
of Bedouins living in the Negev numbers about
190,000 people [10]. This is a traditional, tribal
and patriarchal society that lives in familial clans.
The permanent Bedouin townships are ranked
in the lowest national economic standard-ofliving
percentiles. Yet only half of the Bedouin
population lives in these recognized townships;
the other half lives in unrecognized settlements,
where there are no basic municipal services.

Women in the Bedouin community do not have
a role in the public sphere. Their responsibilities
are limited to their household: the family tent,
procreation and rising their children are their
only duties. Bearing many children, especially
boys, reinforces the social status of women in
the Bedouin community. In addition, there is
a barrier between them and the outside world,
due to a variety of reasons, such as for instance:
the distance from the city, the insufficient
means of transportation and road infrastructure,
cultural restrictions on women’s independence
and movement, a lack of child care, and being
responsible for a large number of children. In
fact, some live without basic conditions, such as
water and electricity.

With regard to men and their role in the
community: the man is the breadwinner, and
family protector Characteristic of traditional
and collective societies around the world, here as
well, gender determines division of labor. This
maintains the existing social structure and places
the man as the highest authority in management
of the family and the tribe [11]. This study
is, therefore, significant in its unprecedented
assessment of ways of coping and burnout
in Bedouin parents, taking particular note of
fathers of children with ASD. The conclusions
found here provide a unique contribution to
the literature on gender differences in parental
coping.

Ways of coping, mental burnout

Families of a child with ASD face unique
challenges and stressors due often to an
ambiguous diagnosis, the severity and duration
of the disorder, and problems with the child`s
lack of adherence to social norms. Parents of
children with ASD confront daunting challenges
and multiple demands in their daily life.
Compared to parents of children with other
disabilities or to those of typically developing
children, parents of children with ASD exhibit
higher levels of stress, anxiety and depression.
Therefore, a family whose child has ASD must
make significant adjustments in order to cope
and function adequately [12].

Also, the family system is an important part
of the environment and plays a central role in
the developmental outcome of children [13].
Studies of families with a child with ASD
have traditionally examined this interaction by
focusing on the effect parents have on the child,
rather than the child`s effect on the parents. More
recently, research has focused on the difficulties
that parents face related to caring for a child with
ASD, and the strategies employed to cope with
the stress associated with raising these children
[14]. However, the majority of studies on ASD
focuses on the mother-child relationship and
typically do not include an analysis of the fathers.

Ways of coping - One of the main challenges
for parents is to effectively cope with the child’s
condition while juggling the requirements of
everyday living. Coping may be a valuable and
much utilized tool for positive family functioning
in families that have a member with a disability
[15].

Over the last two decades, researchers have
studied the ways of parental coping with children
with disabilities [16]. Despite the abundance of
research on coping styles of families of children
with disabilities, the research on coping among
parents of children with ASD, in particular,
remains scarce [17]. Therefore, one of the aims
of this study was to examine the ways of coping
among Bedouin parents and to examine whether
there is a connection between coping and family
functioning.

Burnout - A recent meta-analysis suggested
that parenting stress is higher in parents of
children with ASD than in parents of typically
development children. Other studies have shown
that the stress levels of mothers of children with
ASD are higher than those of mothers of non-disabled children [18]. Quantitative cohort
studies and quasi-experiments in Latin America
found that the sensation of tiredness and high
demand on the parents caused by taking care of
the child with ASD did not change in the time
of the follow-up. Another important finding was
the higher prevalence of exhaustion in mothers
than in fathers [19,20]. The findings of a study
published in 2015 showed that life stress,
burnout and depression are closely associated
and could share some underling mechanisms
[21]. The depression and the emotional
exhaustion are correlated with the number of life
stress events [21]. According to the description
made by Procaccini and Kiefaber [22], parental
burnout is a condition resulting from untreated
chronic exhaustion due to the persisting
demands of family needs and the cessation of
non-parental activities, which deplete the energy
and motivation of the parents [22].

Raising a child with ASD can be enervating.
These children experience a complex range of
social, emotional and behavioral difficulties
that present significant and ongoing concerns
for parents [23]. However, there have not yet
been studies that examine this dimension in
parents of children with ASD in the Bedouin
community. This study will examine the mental
burnout among mothers compared to that of
the fathers, as well as the potential connections
between coping, and mental burnout of mothers
as compared with fathers.

The purpose of the study

The assumption of this study which is based on
the characteristics/different roles of fathers and
mothers in the Bedouin community are that
the roles of the each parent are fundamentally
different, and so substantial differences will be
found in the nature of the coping, and mental
burnout of each of these groups. Therefore, the
purpose of this research is to reveal whether there
are differences between Bedouin mothers and
fathers of adolescent children with ASD on these
measures. The key three questions of this study
are as follows:

1) Are the ways of coping, and mental burnout of
Bedouin mothers of children with ASD different
from those of the fathers?

2) Will there be differences in the character of
the correlations between Bedouin fathers and
mothers of children with ASD in the variables of
ways of coping and mental burnout?

Method

▪ Participants

Participants in the study were 148 Bedouin
parents, (74 mothers and 74 fathers) of children
with ASD, all between the ages of 10-18,
81% boys and the rest, 19%, girls. All attend
a special education school for students with
ASD in the Negev. In order to be included in
the study, the parents had to have at least one
child that had been diagnosed with ASD, by a
specialist physician, according to the criteria of
the DSM-IV-TR (2000), They also needed to
receive approval from a placement committee,
which then referred them to a special education
school for students with ASD, as is customary
in Israel according to the Special Education Law
(1988). The criteria for participants in the study
were parents who: can read and write, agree to
sign an informed consent form, live in a nonpolygamous
family, are married, and have at least
one child with ASD. The parents’ demographic
characteristics are presented in Table 1.

Demographic variables

Mothers

Fathers

(N=74)

(N=74)

Age (%)

30-39

18

3

40-49

52

28

50-59

23

62

60 and older

7

7

Education (%)

Below high school

82

4

High school

61

89

Higher education

2

7

Table 1: The demographic characteristics of the parents.

The number of children of the parents is
distributed in the following way: 3% 5-10 years
old, 79% 11-16 years old, and 18% 17-21 years
old. With regard to income sources, none of the
mothers reported that they work; 49% of the
fathers reported that they had work; and the
remaining 51% reported that they receive an
allowance.

▪ Procedure

After the study was approved by the ethics
committee of the Chief Scientist of the Ministry
of Education of the State of Israel, a pool of
parents who had children attending the school
for students with ASD was selected. The teachers
presented the study and its objectives to the
parents, as well as the intended use of the data
to be gathered throughout the research. Each
parent needed to sign a consent form, and to
parents who live together (families who have
polygamous marriage were not selected). The
data were stored protecting the anonymity of
the participants. The data collection process took
place from April, 2015 to August, 2015.

▪ Assessment tools

Demographic questionnaire and family profile

Questions were asked regarding the age, gender,
number of children in the family, level of
education, family’s source of income, and the
gender and age of the child with ASD.

The two questionnaires were translated from
English to Arabic by two bilingual translators
working separately from the Bedouin community.
The two versions were then evaluated by a PhD
student of the Arabic language who chose the
most culturally appropriate translation. The goal
of this procedure, as recommended by the World
Health Organization, was to obtain a language
version conceptually equivalent to the English
instrument but appropriate for the target culture.
In other words, the focus was on achieving a
cross-cultural and conceptual equivalence rather
than on a linguistic/literal one. The culturally
appropriate translation criteria in this study were
as follows: (a) Formal Arabic was used instead
of spoken Arabic which differs between villages.
(b) Relevancy: translating the conceptual
equivalent of a word or phrase (not a word-forword
translation). (c) Simplicity, clarity and
conciseness. (d) Consideration of gender and age
issues and avoidance of using terms that would
be considered offensive to the target population.

Ways of Coping Questionnaire (WOC)

The Ways of Coping Questionnaire- WOC
was developed by Folkman and Lazarus [24].
grouped into eight scales: Confrontive coping
(six items; refers to making active effort to
contain a situation, sometimes associated with
aggression, hostility and risk taking), Distancing
(six items; undertaking cognitive efforts to detach
oneself from a stressful situation and minimize
its significance), Self-controlling (seven items;
an individual’s active effort to regulate their
feelings and actions), Seeking social support
(six items; refers to effort aimed at obtaining
informational, tangible and emotional support),
Accepting responsibility (four items; refers to the
recognition of one’s contribution to the problem
and undertaking efforts to overcome it), Escapeavoidance
(eight items; includes wishful thinking
and behavioral efforts to escape the problem),
Planful problem-solving (six items; focusing on solving the problem in order to contain the
situation, includes careful problem analysis and
generation of possible solutions), and Positive
reappraisal (seven items; covers efforts aimed at
creating a positive meaning for a situation by
focusing on personal growth). There are 66 selfreport
items. Each item is scored on a 4- point
Likert-type scale based on the frequency with
which the individual has utilized that particular
coping strategy [24]. The internal consistency
reliability coefficients ranged from .68 to .79 for
these subscales [24]. Participants are asked to
recall a recent stressful parenting situation (one
that occurred over the past 2 weeks), and then to
estimate the frequency with which they used the
coping strategies described by individual items.
The ratings are 0 (does not apply or not used), 1
(used somewhat), 2 (used quite a bit) and 3 (used
a great deal).

Mental burnout questionnaire

The questionnaire was developed by Pines
[25] and its purpose is to measure the physical
exhaustion that occurs as a result intensive
mental involvement (with a challenging
situation over an extended period of time).
The questionnaire includes 21 items. The 21
items correspond to the three components of
the burnout definition physical exhaustion (e
g, feeling weak, tired, rundown), emotional
exhaustion (e g, feeling depressed, trapped,
hopeless) and mental exhaustion (e g, feeling
worthless, disillusioned, and rejected), Four
of the 21 items are positive (eg, feeling happy,
optimistic). Parents were asked to mark their
answer on a 5-scale Likert scale (1 = very rarely,
to 5 = very often) as to the frequency with which
they experience the statements that are described
in the questionnaire. The mothers and the
fathers filled out the questionnaire separately.
The reliability of the questionnaire ranges from
0.66 - 0.89 (Pines & Aronson, 1981). In this
study, an internal reliability of 0.92 was found.
The burnout score is the average of the responses
to all the individual items. The higher the score,
the higher the level of burnout.

▪ Data analysis

First, t tests for dependent samples were carried
out, in order to see if there are any differences
between mothers and fathers in: A) the ways of
coping (confrontive, distancing, self-controlling,
seeking social support, accepting responsibility,
escape-avoidance, planful problem-solving,
positive reappraisal) with their child’s disability;
B) The measure of emotional burnout. Second, in order to examine the relations between the
ways of coping and the level of parental mental
burnout, correlation analysis was conducted
for each group between the variables of ways of
coping and the mental burnout.

Results

Differences between Bedouin mothers and
fathers of children with ASD in ways of coping,
and mental burnout

To compare coping strategies used by mothers
and fathers of children with ASD (parent’s
gender) analysis of variance was carried out for
each of the coping strategies scales (Table 2).

Coping Strategy Mothers of children with
ASD (N=74)
M SD

Fathers of children with
ASD (N=74)

M

SD

Confrontive 14.33 2.14

14.46

2.66

Distancing 10.20 1.74

9.18

1.18

Self-controlling 16.64 2.12

5.84

2.32

Seeking social support 11.60 2.90

13.73

2.72

Accepting responsibility 10.25 1.80

9.42

1.50

Escape-avoidance 24.00 3.60

21.50

3.24

Planful problem-solving 12.79 2.41

11.81

2.15

Positive reappraisal 15.00 2.77

15.94

2.97

Differences between mothers of children with ASD and fathers were found only for escapeavoidance
coping Mothers of children with ASD (mean for the whole group=24.00) used
this strategy more often than fathers (mean for the whole group=21.50).

Table 2: A comparison of means and standard deviations of the coping strategy
of Bedouin mothers and fathers of children with ASD.

However, in a comparison of the Bedouin
mothers and fathers of children with ASD
on mental burnout (Table 3), a significant
difference was found thus, the mothers showed
significantly higher mental burnout than the
fathers.

Variables

Mothers of children
with ASD

Fathers of children with ASD

(N=74)

M SD

(N=74)

M SD

F(7,89)

Mental burnout

4.92 .76

.83 4.3

2.09***

***P<.001

Table 3: A comparison of means of the mental burnout of mothers compared
to fathers of children with ASD.

Correlations between variables-ways of coping
and mental burnout in Bedouin mothers
compared to fathers of children with ASD

In examining the relations between the ways
of coping and mental burnout of the fathers
compared to the mothers (Table 4), Pearson r
correlation coefficient was calculated between
the overall mental burnout and its eight coping
strategies for each parent group separately
(Tables 4).

Coping Strategy

Mental burnout

Mothers

Fathers

Confrontive

-.074

-.120

Distancing

.321*

.080

Self-controlling

.263*

.441**

Seeking social support

.266*

.412**

Accepting responsibility

-.452**

-.004

Escape-avoidance

.120

0.201

Planful problem-solving

-.211

-.118

Positive reappraisal

-.211

-.250

*p<0.5, **p<0.1

Table 4: Correlations between ways of coping of fathers compared to
mothers and the level of burnout for each group.

The findings in Table 4 reveal that in examining
the relations between the ways of coping and the
mental burnout of the fathers compared with
those of the mothers, in the group of mothers, the
highest mental burnout correlation coefficients
were obtained for accepting responsibility
and distancing. Accepting responsibility was
found to be negatively correlated with mental
burnout. The use of distancing strategy was
positively correlated with mental burnout.
Mental burnout was also positively correlated
with self-controlling and seeking social support.
In the group of fathers, the strongest positive
correlations were found between mental burnout
and self-controlling and seeking social support.

Discussion

This study examined the ways of coping and
mental burnout, and the interactions among
these variables in Bedouin mothers compared to
Bedouin fathers of children with ASD.

The comparison in terms of parental coping
strategies revealed only one difference between
fathers and mothers of children with ASD. The
only difference was found in escape-avoidance
coping, which was employed more frequently
by mothers of children with ASD. Other
investigators have reported similar results [26].

Withdrawal from a stressful situation may be
associated with increased level of stress, parental
depression and decreased level of positive mood
[27-29]. It follows from the results of the present
study that mothers of children with ASD should
be supported in developing those coping methods
that will protect them from stress and reduce
its negative consequences. It should be noted,
however, that the difference between the study groups in terms of this strategy was minor, with
membership in a particular group accounting for
only a small percentage of variance.

Regarding the measure of mental burnout, the
mothers scored significantly higher than did the
fathers. This is not surprising, considering that
the Bedouin mother is primarily responsible for
the raising and care of children. Furthermore,
she is the one who manages the challenges and
needs of the child with ASD, and often with
neither professional support, nor a sufficient
understanding of the nature of her child’s
difficulties. Several studies have investigated the
frequency and severity of emotional exhaustion
among parents of children with disabilities
[30,31]. Those studies showed an association
between the parent’s gender and the emotional
exhaustion level. Few of these studies done
outside North America and have examined
levels of caregiver burden across different ethnic
groups. White American caregivers report more
negative consequences and burden than black
American caregivers [32], even though the
former were less likely to reside with their ill
son or daughter [33]. No previous studies have
directly examined differences in burden among
parents in the Bedouin community in Israel.

The study also examined correlations among the
variables: ways of coping and mental burnout
and of the Bedouin mothers compared to that of
the fathers of children with ASD. The findings of
this study reveal that in examining the relations
between the ways of coping and the mental
burnout of the fathers compared with those
of the mothers, in the group of mothers, the
highest mental burnout correlation coefficients
were obtained for accepting responsibility and
distancing. Accepting responsibility was found
to be negatively correlated with mental burnout
.The use of distancing strategy was positively
correlated with mental burnout. Mental
burnout was also positively correlated with selfcontrolling
and seeking social support.

In the group of fathers, the strongest positive
correlations were found between mental burnout
and self-controlling and seeking social support.

Mental burnout is a dynamic disposition which
encourages adaptive coping. In this study, mental
burnout, were positively associated with seeking
social support and self-controlling in Bedouin
parents of children with ASD. As we know,
coping by seeking support is associated with
level of daily positive mood [29] and parents’
subjective well-being [34]. Our results add to this picture by showing that the higher the
level of mental burnout , the more likely parents
are to use coping by seeking support and make
efforts to regulate their feelings and actions (selfcontrolling
coping). A particularly interesting
result is the relationship between mental
burnout and accepting responsibility in Bedouin
parents of children with ASD. Mental burnout
was negatively correlated with this coping
strategy. Accepting responsibility, similar to
distancing, self-controlling and escape avoidance
is characterized as way of managing a stressful
situation through cognitive and emotional
efforts without modifying the situation itself. It
is described as mainly emotion-focused coping
[24]. People who use this coping strategy blame
themselves for the problem [35]. This strategy
may be associated with negative outcomes of
stress [24] and depression [36]. Glidden [34]
showed that accepting responsibility is negatively
correlated with subjective well-being in parents
of children with developmental disabilities.
It is particularly important to investigate the
determinants of this strategy due to its negative
effects. Our findings may suggest that one
of the negative consequences of low mental
burnout may be a tendency to blame oneself for
the occurrence of stressful situations related to
parenting the child. It should be emphasized that
this relationship was only found in the group of
mothers. This information adds to our knowledge
on the underlying mechanisms of self-blame
and could be an important factor to take into
account in mothers support programmers. In
the group of fathers, statistical analysis revealed
positive correlations between distancing and
mental burnout. So far we have not established
what determines the use of this coping strategy
by fathers. In some circumstances, especially
those associated with a sense of helplessness in
fathers, it could potentially play an important
role in coping with stress. This issue requires
further analysis, especially in the context of
other empirical data suggesting that distancing is
negatively related to family strengths [37].

Based on these findings, it is critical for support
service experts to develop formal and informal
social support tailored to the Bedouin culture
and its values, for the families of children with
ASD.

Limitations

It is important to bear several limitations
in mind when considering the findings and implications of this study. The first is that this
research was the first to examine the way(s) of
coping, and mental burnout of Bedouin parents
of children with ASD, in general and of the
fathers’ perceptions in particular. Therefore, no
cause-effect inferences can be made. Moreover,
using self-report as the exclusive method of
data collection is inherently limiting. It is also
important to note that the findings of this study
are correct within the specific cultural context of
the Bedouin community in Israel, and should
be applied judiciously to cases of parents who
have children with ASD in non-Arabic speaking
western communities in the world. By the same
token, further research in other non-Western/
non-English speaking communities is needed
in order to deepen our understanding of the
challenges and needs of parents of children with
ASD.

Conclusion

Significant differences were found between
Bedouin mothers and fathers of children with
ASD on ways of coping as well as mental burnout. In an examination of the relations
between the variables: significant relations
(positive and negative) were found between ways
of coping and mental burnout, in both Bedouin
mothers and fathers of children with ASD. These
findings underscore the need for further research,
in particular, on the dimension of and in light of
the argument of Higgins [38] that little work has
been conducted in particular on (the impact of
mental burnout on) family functioning.

All of the above points to the need for developing
more culturally tailored interventions, which
focus on social support for mothers and fathers
in the Bedouin community. There are two
reasons for this: the first is based on qualitative
findings demonstrating that social support is an
integral piece of the coping milieu in families
with a child with ASD [14]. The second reason is
that the Middle Eastern culture relies on a strong
family support system based on the extended
family lifestyle [9]. It is possible that effective
social support could lead to better ways of
coping, which in turn would help reduce mental
burnout and lead to improved functioning, for
both mothers and fathers [39-43].

References

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Rieger A, McGrail JP. Coping humor and family functioning in parents of children with disabilities. Rehabilit. Psychol 58(1), 89-97 (2013).

Pisula E, Kossakowska Z. Sense of coherence and coping with stress among mothers and fathers of children with autism. J. Autism. Develop. Psychol 40(1), 1485-1494 (2010).

Obeid R, Daou N. The effects of coping style, social support, and behavioral problems on the well-being of mothers of children with Autism Spectrum Disorders in Lebanon. Res. Autism. Spec. Disord 10(1), 59-70 (2015).